Evolution of a Decision (Part 1)

You can have surgery, or you can be monitored.

Surgery means you likely will lose your leg.

Monitoring means you risk another relapse.

- - -

Before going forward, we need to go back…

In March I had a PET scan at Memorial Sloan-Kettering that showed that there was no active hypermetabolism. That can be translated to “no malignancy”. My doctors said “we consider you to be in remission.”

Good news.

They also said that they did not recommend surgery at that time. “There are serious risks involved. Let’s wait a few months and see how things look. We’ll re-evaluate it then. Right now, there is no urgency.”

My celebration meal was a beer and a panini
at the Rapha Club. I was delirious.

That was a polite way of saying: “heal.”

I was over the moon. I celebrated.

But I was hurting.

Each day was a challenge. It was two steps forward, one step back. Except when it was one step forward, two steps back.

I needed to heal. The doctors were right. I was a mess. Major surgery at that time? I don’t even want to think about it.

My next set of scans was to be in July, but May was not kind to me. I was hurting—badly. Daily.

In early June I spoke with my oncologist at Georgetown. She was surprised that my New York doctors were counseling me to not have surgery. In her mind, protocols are protocols.

And the pain I described concerned her. She suggested that we get scans done immediately. In her words: “I like to be over-cautious. Experience tells me that the test you don’t do is the test you needed to do. Get the scan.”

So I did.

And the scan showed…no change from March. My complications were just that—complications. On the balance, that was fine. The cancer had not come back.

We talked more, and I understood that she was very interested in my pursuing surgery. She was being coyly persuasive, and in her Jedi mind-trick manner she convinced me to let her reach out to a colleague in Indiana. She wanted another opinion on my situation. I agreed. It was a non-decision.

Summer arrived. I recovered. I lived. The LAs and I enjoyed the love of great friends in Maine.

And when I got back, I went to New York—disc in hand—to see my oncologist at Memorial Sloan-Kettering.

Approaching the Rabbit Hole

I was feeling better. Some days I felt…good! Others, not so much. I still entered brain-squeeze phases, when I could barely think or see and all I could do was sleep.

But I also had extended periods of lucidity.

And in those times, I considered surgery. I knew the protocol—have surgery. It was a non-decision…wasn’t it? It’s what I was supposed to do, right?

Right?

I sat in his office and went through my list. I described this and that, reported on the other, and came around to the 800 pound gorilla in the room: what about surgery?

As I previously wrote:

You have a mass of residual scar tissue that has adhered to all the surrounding structures, including veins, the iliac artery, and the femoral nerve. We don't want to go in there. We cannot predict the outcome. The chances are very good that you will lose some leg function.

If there are complications with the veins, drainage from the leg could be compromised, and you could end up with "elephant leg". If the artery is compromised—and we already know we are looking at an arterial bypass and graft—it could mean the loss of your leg. If the nerve is damaged—and we already know it is affected, based on your pain—we have no idea what that result would be. It could be loss of sensation, or function, or both.

And any combination of those complications could happen.

While we want the mass out of you, we view this as high-risk surgery.

OK, then.  Message received.

But, I’ve learned something from my cancer experience. You need to press your doctors. Challenge them. You are your own best advocate—and sometimes your only advocate. So step up.

I stepped up.

I talked about the known protocols. I expressed my concerns. I wanted more detail on the risks, and on the surgery, and…

We ended the conversation thusly: I would have another set of scans in September. Once those images were in, I would meet with him (oncology) and my surgeon to discuss my options. It was a perfect decision. I would get more time to heal. They would get more mature (and far higher-quality scans). And we could meet and focus on the surgery question.

Entering the Rabbit Hole

After returning home from New York, I got an email from my Jedi-Georgetown onc:

Indiana says:

"[Wheelsucker] has a small residual mass near the left iliac artery and vein.  It should be resectable but looks necrotic.  A small number of late relapses are cured with chemotherapy alone so if he wants observation I don't think that would be wrong.  If he wants surgery it is doable."

As I wrote in August:

What do I do now?

What would you do?

What do I do now?

- - -

The seeds of cancer are within me. They sit in my scar. My chemotherapy drugs...can cause...cancer.

The soil for cancer is...me. My flesh awaits.

...

(I just had a smack-across-the-face moment. I meant to write "The soil of cancer..." in the second line. I wrote: "The soul of cancer is within me.")

The soul of cancer is within me.

...

What do I do now?

What I Did

As best I could, I set it aside. I failed more often than I succeeded. But I tried to contain it.

I was shattered after Pelotonia Day 1.
Thinking back, I've been shattered through most of 2014.

I rode in Pelotonia, and I suffered awfully. I quit Day 2. (I regret that.)

I got the LAs back to school.

I worked. I lived.

And I was clench-your-teeth-till-you-taste-blood stressed.

Injured, I had to get off the bike. No fat bike joy. No riding at all...not even on a trainer.

I ate too much of the wrong things.

What do I do?

My relapse anniversary came. Went. I noted it, quietly. Heavily.

I drank too much of the wrong things.

The soul of cancer is within me.

September 22 was circled on my calendar. My next scan.

What was I going to do?

What do I do?